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• RP - New diagnosis for teen
• Posted: 2007-12-22 02:46:18 By Margaret M
• Hello,
  My 15 year old son has just been diagnosed with probably RP. His visual field is limited and he had an abnormal ERG. His eyes look fine to every doctor who has looked at them. We have no family medical history for him as we adopted him from Russia at age 2. I have 2 questions:
  
  1) If there are no structural changes to the eye does that mean he is at an early stage or could it be something other than RP - perhaps optic nerve?
  
  2) Today he said that for about 5 minutes today his vision looked like he had a red filter over his eyes. He could see the same amount as before it just looked red. Is this just another factor in RP of should I have his eyes checked again?
  
  Thanks.
  Margaret
  

• Re: RP - New diagnosis for teen
• Posted: 2007-12-22 14:47:05 By Eric J
• How is you son? Does he know, if not tell him and he will need help making he way through life. a counsler can stear in the right direction. Eduction is improtant, it should begian now. Your education is important as well but should be more of how to deal with this news as well how you can and should handle it, and someone you can talk to about it. Be storng have fath in you God how ever you beleive, you faith will keep you whole. let People know who Love you and your son get there support.
  
  someone always has your back
  
  Eric

• Re: Re: RP - New diagnosis for teen
• Posted: 2007-12-22 17:25:26 By Margaret M
• Hi Eric,
  
  Thanks for the encouraging words. Yes, my son knows his diagnosis and the probable outcome and he is seeing a counselor - though I'm not sure it she is the right one for us. I will give it a little more time before I decide. We are also going to a low-vision clinic because the retina spec. was not very helpful in helping us plan and manage school. Thanks again. Margaret

• Re: RP - New diagnosis for teen
• Posted: 2007-12-23 14:47:50 By Darran Z
• Hi Margaret,
  
  I'll answer your questions.
  
  1. I'm not sure what you mean by "structural changes" but there are subtle signs that only someone familiar with RP will pick up. That would explain why all the other doctors couldn't find this at first.
  
  Structurally, the retina is intact and looks normal. They may find "bone spicules" that are scattered across the retina. Some of the time they ar enot always present but mostly are. One would see attenuated blood vessels as well. Often the optic head has a waxy palor to it. Other than that, that's about all there is. You would see pigmentation which would indicate the rods/cones dying.
  
  2. Sometimes the flow of blood can be disrupted and we could see differently at times. Often we see flashes of light. I haven't heard of any filter colors. So I'm not sure what this is about.
  
  You would be happy to hear that there is assistance for him to attend college. I would suggest contacting the state agency that services the blind and speak with a Vocational Rehabilitation (VR) counselor. They could help him with college tuition, any expenses associated with this along with any assistive technology he may need to be successful in college and in the career.
  
  So event hough this is happening, there is ways around it.
  
  Darran

• Re: Re: RP - New diagnosis for teen
• Posted: 2007-12-23 15:05:33 By Margaret M
• Hello,
  
  Thanks for your kind message. None of the doctors- including the retina specialist - have seen any bone spicules, blood vessel changes or anything else. That seems odd to me that he can have so much vision loss and nothing other than an abnormal ERG. I hope after the holidays we can have another retina specialist take a look.
  
  Best wishes to everyone for the holidays.
  
  Margaret

• Re: RP - New diagnosis for teen
• Posted: 2007-12-30 22:48:58 By Cynthia M
• Margaret
  
  I have 3 children affected with RP. My boys both have the obvious bone spicules; my 13 yr old daughter does not; though she has the limited visual field and the abnormal ERG.
  
  My oldest affected is 15 and was diagnosed just over a year ago, my 7 year old was diagnosed a year ago and my daughter in March of this year.
  
  It is good that your son knows and counseling will help; with the right counselor (not always easy to find). Also, as was mentioned, contact your school district as soon as you can and get any services they offer started. It will be a great help to him in many ways.
  
  I also belong to an online support group for parents of children with RP. They are a great group of mothers/fathers and if you are interested I can send you an invite. It is a private group so noone feels uncomfortable talking about their children. We have children of all ages and stages and some with other disabilities also.
  
  Feel free to contact me at mamamomgrandma@yahoo.com
  
  Cynthia